I would like to invite you and your team of medical care personnel to join a Clinician-Patient discussion group concerning BIA-ALCL found on
https://www.facebook.com/groups/Biaalclclinicianpatientdiscussiongroup/?multi_permalinks=1481485988638772&notif_id=1515346486552135&notif_t=group_activity
So little is known about this disease and anything that can be done to increase the knowledge of it and the symptoms women present with would help those who will have it in the future. I believe it is not so rare a disease as pictured. It is a very under reported disease due to the fact of very little information about it. The women here have so many varied symptoms one can see the difficulty their physicians are having finding the cause. It is difficult to diagnose. But found early the treatment is only surgery with monitoring. If left due to inability to search out the cause of the symptoms, the treatment is surgery plus CHOP chemotherapy. Many women could be helped by spreading this information, and this site is a very good one for seeing the problems with diagnosis and medical care personnel not understanding BIA-ALCL.
I thank you in advance,
Carol Small
Undergoing Cycle 4 of 6 for BIA-ALCL spread to my ribs and chest wall
The summary of my third cancer, ALCL 2017
Back Story:
1994 DCIS Breast Cancer stage 0, lumpectomy surgery, followed by mastectomy surgery for bigger margins, followed by immediate reconstruction.
2012 Metastatic Breast Cancer in lymph node deep in underarm biopsy, in liver biopsy, and spots on bones on PET scan. Taking aramomatase inhibitors.
2015 silent heart attack causing Congestive Heart Failure, no cause found, all clear and in excellent health. Conjectured it was the rare side effect of the aramomatase inhibitor. ( 2 Recent Nuclear scans show hear now has no damage)
Cliff's notes: 2016 in the early summer there was a sailing incident where my left arm became tangled and pulled super hard.